Square Peg, Round Hole

I’ve been reflecting on the boys’ summer and the fact “we” haven’t done our summer assignments. I’m also pondering what this year will hold. It will be the first time Ben and Connor will be seperated. This isn’t a huge concern, they aren’t reliant on each other, but it will still be a big change. I expect they will both soar this year. Their reading and math skills are light years beyond where Austin was, and socially, I expect they’ll have plenty of friends. This is a huge sign of relief.

But it’s a brief reprieve, until I focus on Austin. It’s been an up and down summer. He’s had his good moments, and a few bad. We’ve had some family issues, while not involving him directly, he’s certainly been aware of. He’s been emotional and moody at times. He’s been introverted. I’ve tried to arrange play dates, and even his birthday party and he’s resisted all efforts. I worry that he has no friends. It may seem silly or trivial, but it’s an important part of school and growing up. The teachers have all told me otherwise, but I don’t see his friends, or hear about them. He won’t tell me stories about what they do or talk about. And I worry.

It reminds me that he’s not typical. But what is he?

We recieved a mailer, inviting Austin to sign up to be an Epilepsy Shining Star. It talks about meeting other kids who have seizures and sharing a common bond. But he doesn’t have seizures, or not any more. I wonder, does he fit here?

Yet, he’s not autistic, he doesn’t even have a learning disability. The experts just say “it’s all the result of his epilepsy”.

At the same time, he’s not typical. How do you explain that? Explain Austin without knowing how to categorize him? And if I have a hard time, what must his peers think? Peers who are now starting to shape impressions based on superficial things. And let’s complicate this by proposing to send him to a new school.

Ben and Connor, if thrown in a ‘pool’ and given the chance to sink or swim, I have no qualms that they are going to swim, but Austin, my Austin, he’s going to sink and that scares the crap out of me and I don’t know how to help him.

11 Responses

It’s a very difficult thing to not know really where your child ‘fits’ if the disability he/she has is not clearly defined. What’s equally hard is knowing that so many kids out there are in THAT group, The Undefinables, since so many of the people you and I read about and talk to online have children in similarISH circumstances. No TWO stories ever seem to be that much alike, no TWO outcomes seem to be that much alike, and it can be overwhelming to try to figure out why in the world that is.

Truth is you can’t. So don’t try. (I know you aren’t, you’re venting the frustration you feel about your child, a love of your life, and your legitimate worries about how things will go for him.) But certainly his peers won’t be as evolved as you, so it’s a totally legit concern to have about them. But you’ll be his shield for that, you know that to be true. There may be some battles, but in the end you’ll be the one with the sword held high.

Yup, you heard me. Lemme give you a sec to have that sink in…

It really is me writing this, not some quasi-dimensional Lilly Doppleganger.

I am giving you, the experienced veteran, advice to let go, and I am the rookie who for the past year has refused to. Over the past two weeks I have found my peace again, I just haven’t figured out how to explain it all yet, but its a peace you found long, long ago, that is only temporarily being disrupted by the fear of a new unknown.

Best thing about unknowns is that you can learn about them and study them and make them a part of your lives and even if you never turn the unknown into the FULLY known, usually you learn enough to get by…even if there are still a few unanswered questions.

But you know, as before, you’ll figure out a way through it, you’ll make it work somehow, and you and Austin will be better for it.

You’re one tough Mutha…don’t forget that.

Are you SURE you’re not a Lilly Doppleganger??? ::wiping my tears:: Seriously though Ken, thank you.

Maybe it’s me being PMSy, maybe it’s his approaching 8th birthday, maybe it’s the house hunting, but I am all out of sorts and freaking out. He is who he is, I can’t change that, he can’t change that, all I can do is equip him to handle it. But I am just afraid he’ll always have a hard time with that. Ben and Connor will get an emotional or physical boo-boo and I can say “suck it up, you’ll be ok” and they will. Austin isn’t “built” that way. He doesn’t rebound like they do. I hope it’s delayed emotional maturity, sort of like the delayed processing he has from his epilepsy (or so the neuropsych says), and one day I will look back at this and laugh at myself.

And thank you Ken. I hope this new found you continues to grow strong, for your boys and your wife. I definitely saw (heard) a stronger you in the videos you posted. Congrats for getting there, but don’t despair, if there are some down days, because we’ll be here to pick you up like you just did me. I really love this “family” we all have.

I can empathize in a very different way. My daughter is 15 and still in the body of a 9 year old. Good thing is, after a year of tests, she’s fine physically, just behind physically. It didn’t mean anything the last few years, but I can tell it is affecting her now….all her friends are talking boys, hormones have kicked in, puberty is ancient history for most of them, etc. In fact, she hasn’t spoken to one classmate all summer. Fortunately, she’s involved in her church youth group and that has been very positive for her. I am dreading the beginning of her sophmore year in high school, though. I have a feeling this will be hard on her.
Not much we can do as moms except be there to listen and for them to lean on. And hug them. And wish we could change things.

It is so hard to be a teenager today, but I know you have given her everything she needs to succeed. She’s an awesome daughter! ~~Jen

I remember going through all of this as a child. To use the square pen and round hole analogy, no child fits in any one category nor do they learn in any one way. For that matter a person/child is the sum of the people that surround them, equaling their total life experiences. As adults, we spend so much time worrying about our children fitting in, that we forget what it was like for us and how we turned out. We must remember that life is the great equalizer and the first eighteen years, though are the beginning of our basis of life, most of it is supplied by the family not the school. Life is long and full of opportunity.

I was told many times as a child that my epilepsy would go away and it never did. I was told that once my epilepsy went away my learning disability would go away too. Never happened. Instead, I have a learning disability label that does not describe my learning issues at all. After extensive testing like Austin, I fit into probably seven or eight categories. I have free lanced my way around making my own way in life after accepting that this is the way it is. I had to learn that typical, normal and all those words we use to describe people just will never fit. I define myself, not some t-chart.

Yes, childhood can be a cruel world. The strong will always survive. I learned early how to play the game. The help you give, is standing by your children though it all. Making sure they survive that cruel world. Trust me, when the time comes you will know what to do.

Austin had his 8 yr old physical today so I had a chance to talk to his ped. She reminds me that not everyone is a go getter and super involved like me and that it’s NORMAL to not want to be like this. She told me I need to relax and let him set the pace. Considering she was my ped too, I guess I should learn to trust her 🙂

Jen, My heart aches for you because I know the feeling. My daughter who is 17 isn’t very social. She does have friends but nothing like I did when I was in school. I have spoken to many different doctors and been told ” that is her personality” I am a VERY out going person so hard for me to watch her in a social setting because she seems withdrawn but really isn’t just likes to check things out before jumping in. My favorite quote is ” Normal is only a setting on a dryer”

Jen, lots of hugs coming your way. As a teacher, it was so much easier being on the other side of this equation when it comes to school. Now the parent in me, like you, is worried about my child. My oldest is different. This summer I started a mission to figure everything out. Now that I have my answers I do not know what I am going to do with them. I just know that I am the best advocate for my child and will stand by his side cheering as loudly as I can when I need to.

I am always nervous at the beginning of a school year. Afraid the teacher is going to think I am a nervous Nellie or something. I always pray I get a teacher who understands me, him and my fears and how to allay them. Thankfully we also have a super awesome Special Ed teacher! ~~Jen

We are there too, Jen, right with you. I can only say that your quote, about being the nervous nellie, is us. I threw up three times today, before we had to go to school just to drop off supplies and possibly see the teacher, not because I was excited, but because I really didn’t want to be the Mom of “that kid.” I just wanted to be the Mom of a kid. But, life is tough so I need to get a helmet. I can only get him so far and he is going to have to learn to fly, and he will do that, at his own pace. Pushing only infuriates everyone…

Jen don’t worry about Austin. He’ll be fine. Nicholas is having a lot of the same issues and he doesn’t have any disabilities or issues that we know about. Alot of the not talking and telling you stuff is from him being a boy. Nicholas used to tell me everything and he is a chatterbox but lately he doesn’t tell me as much as he did before. I’m told that’s normal. Nicholas cracked me up the other day….I asked him if he wants to play sports (baseball, soccer, football, anything) and his answer was “I don’t want to play a sport and you can’t make me.” I’m gonna get hit by the ball and I don’t want to play.” Needless to say I’ll sign him up anyways but still he’s just not a joiner. He needs to be forced into the activity. That’s just Nicholas. He’ll be fine. No worries. 🙂